Cure Connections®

Making Strides: The GI Cancers Alliance

Founding members of the GI Cancers Alliance discuss the progress that has been made since the organization was formed, and speak with patients and industry leaders about ways to improve the patient journey and ultimately improve patient outcomes.

▼ Episode 1 Reacting to a Loved One's Rare Disease Diagnosis

Tom Stockwell explains how he found information and resources following the diagnosis of his son’s advanced fibrolamellar hepatocellular carcinoma, an ultra-rare liver cancer.

Tom Stockwell, whose son was diagnosed with advanced fibrolamellar hepatocellular carcinoma, and John Hopper, president of the Fibrolamellar Cancer Foundation and co-chair of the GI Cancers Alliance, remark on the importance of taking a proactive role when making treatment decisions with healthcare professionals and emphasize the value in establishing a survivorship care plan.

Reflecting back on what he learned as a caregiver for his son, Tom Stockwell discusses how he provides assistance to others as a patient navigator for the Fibrolamellar Cancer Foundation. Stockwell further explains why advocacy and research are so important in rare diseases.

Craig Lustig and Martha Raymond discuss the global vision of the GI Cancers Alliance and highlight the types of members who help to form its growing coalition of support provided to those affected by a gastrointestinal cancer.

John Hopper, Craig Lustig, and Martha Raymond reflect on unmet needs and gaps in the management of gastrointestinal cancers (as identified through a survey conducted by the GI Cancers Alliance), and describe the types of educational resources that will soon be available through the GI Cancers Alliance’s new resource library.

Craig Lustig and Martha Raymond remark on the impact of the GI Cancer Alliance’s partnerships with advocates and healthcare professionals that support patients with GI cancers and discuss the role of the coalition’s new advisory committee.

Sarah Bennett emphasizes the value in connecting patients following a cancer diagnosis and highlights her role in developing a social media site that empowers the cholangiocarcinoma community. Bennett also provides tips to family and friends that want to provide support to a loved one diagnosed with cholangiocarcinoma.